Life with AS & SPD from a woman's perspective

Posts tagged ‘misophonia’

The Sum of All Tears: Outcome of Allison’s Therapies

Since I’m no longer feeling well enough to make You Tube videos, I will be blogging over here @ WordPress indefinitely. This post is about the outcomes of all the treatments I underwent in 2009. I just finished telling readers about the successful outcome of Tinnitus Retraining Therapy. My loudness discomfort levels or level of intolerance/hypersensitivity to sound in general improved greatly, into nearly the normal range. My LDL’s had been in the 70 range and are now in the 80′s in each ear. If I didn’t have the phonophobia and misophonia (fear of sound and hatred of sound, respectively) that my audiologist thinks for certain that I possess, then all would be well. I am using the wearable sound generators until July to finish out the full 18 month course of treatment. The reason for this is the same reason your physician would want you to finish out the full course of antibiotics he prescribed for you if you had a serious infection.

Another treatment that I did was neurofeedback. You can see the video I made concerning this on You Tube. I also have neurofeedback videos by other sources in my ASD vlog. People with autism, ADHD and those involved in high-performance sports find neurofeedback helps them calm down and focus. I did not get the chance to benefit from this fully, not due to malpractice, but due to high co-pay. I’ll grant the fact my mom and I were fortunate to find a neurofeedback treatment center who would accept Medicare. They are rare, as we found out, and to be BCIA certified. But to be effective, the patient needs 2-3 treatment sessions per week. One isn’t enough. I knew this was fact, not a ploy for more business, after 8 months of treatment.  So I was lucky…just not lucky enough. I stopped going in early January, 2010.

I have used electrotherapy and was using it in conjunction with neurofeedback. The Alpha-Stim unit, which tamps down stressful Beta waves in the brain, and stimulates the Alpha waves (hence the name), was of use for duration of use, which was 1 hour, but the crippling anxiety which I am constantly under, came back after use. I found myself  “overdosing” on using the unit in the hopes of calming down. The effect of using Alpha-Stim is supposed to be felt anywhere from a couple of hours to a few days, depending on the person, which is a calming effect. I quit using it, too in January, after 8 months.

Finally, weekly therapy proved to be too much for me to process. Even the best of therapists with the best of intentions (which in discovering, was a first for me), cannot grasp the complexity of my situation. I think it goes beyond autism and hyperacusis and perhaps even phobias. Decoding the mystery of me proved to be too painful, and I had a meltdown. My therapist made one error-he got too close to me and stared at me. I had finished screaming and had backed into a corner of the room, crouched on the floor. Temple Grandin knows how animals feel and think. They don’t like to be stared at (although my therapist has an unconventional dog, as he told me that she likes to be stared at. It equates as affection for her, so he assumed I was like his Husky in this way). From what I know of animals, they don’t like to be stared at, it equates with aggression and can incite attack (as my dad taught me when I used to play with my dog and I would stare at him and growl, because I too wanted to be a dog at that age). I have always avoided eye contact on some level, either all together or doing it part-time if I am comfortable with that person. Though comfortable with my therapist, I was in meltdown mode, like a panicked animal, and was, literally, cornered. Instinctively, not premeditated, I punched him in the chest. He had invaded my space, my territory.

After a few days, I was able to explain this to him in an e-mail. He did what other therapists did not, he listened and understood. He accepted my apology. We did not use my having AS as an excuse to box. Instead, we came up with a plan on how to handle similar future situations with either him or others.

Unfortunately, I have felt increasingly worse, to the point I need to stay home and avoid people all together. I have fought so many battles for so many years (14 to be exact), but I have lost the proverbial war. I have no more fight left in me. They want to try a procedure on me called “desensitization therapy”, which involves a very gradual approach to the phobic (feared) objects, in my case, the sounds and eventually adding the sources.

I have tried slow, steady progressive desensitization on myself. I did so last year. I graduated from each goal with the feeling of just tolerating. I achieved no enjoyment nor sense of accomplishment. My state of hyper-vigilance never wavered in severity. In truth, I wanted to be in my room with the windows shut, rocking.

But I did it anyway. To prove to them, my treatment team, my mother, aunt and self, that I wasn’t going to give up, that I could try again, and with all of these treatments, I might just win…for good this time.

I know better now. There is no “win”. There is no “prize”. Not in my case. There is struggle and there is back-slipping in spite of gripping with all of my might. I also know that I cannot live with this knowledge forever. I won’t allow myself to be put through anymore torture despite good intentions on the therapy front.

Honestly, I do not know where I will go from here…or how.

Silent Prayer

Silent Prayer

Taken in field across street from my house in 2002. The cover for my poetry collection “Silent Prayers”.

Update 11/28/11: I have found in life’s journey that the path does not go in a straight line. In geometry, a straight line is the shortest (therefore easiest) method between two points. This is not geometry, this is my life, and as with most lives, it is full of obstacle courses, maybe a little more-so than others. You will find, however, as I was blessed enough to, that things have improved. See further posts (i.e. “autisticaplanet’s ear gear) for testament that the twisting, turning road of spectrum life has it’s good and life-changing moments.

To quote Susan Moreno “You Are Not Alone!”

Hyperacusis Recovery…What’s Next?

I went to see the audiologist who specializes in treating hyperacusis Thursday. It has been 14 months since I began treatment for my sensitive hearing. My levels of loudness discomfort (LDL) had been in the 70-80 range 14 mos. ago. They are now in the 80-90 range, which is exactly where they should be. Since I am only sensitive to certain sounds not all sounds, and since my reaction is so strong, the audiologist wonders if I don’t also have what is called Misophonia-hatred of sound. The diagnosis is only 10 years old. I hate any sound that hurts my ears and jars my startle reflex. I was born that way. I know I have developed phobic behavior as a result of the traumatic way I have had to handle the outcome of being exposed to the sounds. I’ve hit a small kid on the head at age 16. This is not an action I want repeated, for some kid or for me. I don’t want jail. So now there are some theories being developed. Hypnosis and Desensitization are a couple of the techniques. I will soon be working with a psychiatrist, in addition to my therapist, who specializes in treating phobic disorders. I want to try taking GABA. GABA has been found to inhibit the central nervous system. I know someone who takes it to calm down after a stressful day on the job. I’m talking about the vitamin, not the prescription found in Neurontin. I’ve come to realize that if you are a person with a complex problem who asks for help from a support group-and have your own mind (as opposed to having your mind owned), you will get beaten up by the self-appointed smart-asses who have Googled their way through life, or live the mantra: “I’m too blessed to be stressed”. That is why I have blocked commenting until now (8/19/11).

Update: Jewel-Osco doesn’t carry GABA CALM. You have to buy it at a health food store. My mom will be going to one soon to talk to someone there about it.

Update: 8/19/11: I have been trying to reach Dr. Pawell Jastreboff in regards to being an advocate to the insurance companies who prohibit coverage for TRT. There has been no answer as of yet. I found out that the reason no insurance plan covers it is that there has been no peer-reviewed  medical study done. I wonder why? Link: http://www.priorityhealth.com/provider/manual/auths/~/media/documents/medical-policies/91482.ashx

You can actually view one insurance carrier’s ( Priority Health) forms. This isn’t my fight alone. If you have a vested interest in making sure tinnitus/hyperacusis sufferers get TRT, please self-advocate. And send me any links/e-mails you use so that I can advocate as well.

Tinnitus Retraining Therapy has an 80% success rate. That’s more than enough of a percentage to get covered.

“More can be achieved through partnership than by individual efforts.”-Linda Walder Fiddle

This post was originally written March 26, 2010. It was updated August 19, 2011.

Update 6/25/12- I see this post gets a lot of traffic, so I went back over it & found that some things need to be updated for the reader. I seriously question the allegation of “Misophonia” for those with SPD. I do not, nor have I ever had a “choice” whether or not to “like” or “dislike” a sound. If something hurts you, it hurts! It is toxic for you and you need to seek treatment for it, not have some doctor (who did not wish to speak about autism when asked) tell you there was ever a choice. The psychiatrist who specialized in phobias refused in person to treat me. He acted as if he were in the room with an alien as he sat and listened to me talk about autism spectrum disorder, something he admitted he knew very little about. Read the post “autisticaplanet’s ear-gear”, and you will come to learn that the best help is the kind that  (aside from TRT) comes from a little help from above and the fruits of labor resulting from you & those who love & care for you!

TRT is a very good treatment to explore as a last-ditch effort if other forms of sensory-integration for specifically auditory sensitivity aren’t working. If you can afford it and tolerate sound generators in-ear that play white-noise all day, it will, 80% of the time, help desensitize the part of the brain that is misinterpreting the processing of certain sounds such as you have read here.

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